Amber’s Story

HeartKids has made a big impact on the lives of many Australians affected by Congenital Heart Disease. Six babies are born every day across Australia with CHD, it is the most common birth abnormality and the greatest killer of young Australians. It takes twice as many lives as cancer in children and more than all other childhood diseases combined.

Our daughter Amber Field was born in 2012 with Congenital Heart Disease. We found out at our 20 week scan that something was wrong with our baby’s heart. After having two healthy boys already this came as a shock to us. We were given the option to terminate our pregnancy however we felt strongly to proceed and give our baby every chance at life. Our Cardiac Specialist advised that surgery could be performed to repair Amber’s heart after she was born which gave us a glimmer of hope that our baby may survive beyond birth.

After close monitoring for the remainder of our pregnancy, Amber was born full term on 29th October 2012.  After a brief kiss and cuddle she was whisked away by her medical team who performed numerous tests and monitored her condition.  She was found to have multiple defects of her heart including a HLHS, Univentricular heart, Unbalanced Artioventricular Septal Defects (AVSD), Double Outlet Right Ventricle (DORV), Infundibular and Valvar Pulmonary Stenosis meaning that Amber’s condition was complex.  We were relieved initially to hear Amber’s condition was stable but she would require surgery to insert a BT shunt to improve her blood flow. This would be the first stage operation for a subsequent operation – the Fontan procedure which would further improve Amber’s oxygen levels and extend Ambers life expectancy. We were allowed to take Amber home after 4 days and wait until she required this surgery; but would require close monitoring by her medical team at Princess Margaret Hospital.

At 5 weeks of age we noticed that Amber’s skin was becoming bluer. We took her to PMH to find that it was now time for her first surgery. This was such an anxious and worrying time, handing our baby over putting all of our faith and trust into her medical team. Amber’s surgery went well and after 5 days we were allowed to take her home. Over the next few weeks we noticed that Amber would have short bouts of blueness. A CT scan showed that the BT shunt was unsuccessful, so a second BT shunt would have to be inserted, this time on the other side of Amber’s heart. This came as a shock to us that she would require another surgery so early on; she was now only 12 weeks old.  Uncertainty clouded us again, more worrying and juggling our other kids between friends while we stayed with Amber in the hospital. Amber’s second surgery went well and again after 5 days we took her home. Her recovery continued to astound us and we remained positive that she could get through her next surgery at 8 months of age; open heart surgery, with no problems.

In readiness for the Fontan surgery Amber was required to have a Cardiac Catheterisation and CT scan. This was an overnight stay as she would require a general anaesthetic. These tests would ensure that Amber’s pressures in and around her heart and lungs were at the optimum levels for the Fontan to be successful. The results were unfavourable; Amber’s lung pressures were too high showing signs of Pulmonary Hypertension a rare lung disease. We were devastated to say the least, another bump to her rocky start to life. She was put on a medication that would hopefully bring these pressures down but it was not guaranteed to work. For the next six months Amber took this medication 4 times a day. To see if this medication had worked Amber endured another Cardiac Catheterisation and CT scan.  Much to our disappointment it had improved her pressures slightly but not enough to proceed with the Fontan surgery.

With Amber growing so rapidly we were advised that the BT shunts would need to be removed and a bigger Central Shunt inserted. She would also need an Atrial Septectomy which is the removal of part of her heart to hopefully bring the pressures down and improve her blood flow. Unfortunately this was a higher risk operation as it would require Amber’s heart to be stopped and for her to go onto an ECMO (heart-lung bypass) machine for support. This machine would act as Amber’s heart & lungs whilst the surgery was being performed.

At 14 months of age, one week before Christmas 2013 Amber went in for her surgery and we remained positive that she would come out in flying colours with no major hiccups as she had done for her previous surgeries. When the expected surgery finish time lapsed and the phone call updates stopped we felt panicked that something had gone wrong. Our feelings were realised when her surgical team entered the room to tell us that Amber’s heart was not functioning normally and that she would have to stay on the ECMO machine in the ICU. This machine had a use by date of 7 days and each day that Amber remained on it her chance of survival decreased. Still we remained positive that in a few days she would come off the machine after the swelling reduced as it had been through a lot of trauma. We maintained a bedside vigil making sure she knew we were there, stroking and holding onto her tiny body, talking to her even though she was heavily sedated. For the coming days we listened for any glimmers of hope in conversations held in ear shot between her medical team. We quickly learned the terminology and asked many questions. Amber developed fluid on her lungs which delayed the first attempt in her coming off ECMO and each day that passed came more anxiety as her medical team worked tirelessly to get the fluid off. On day six (Christmas Eve) Amber suddenly began to bleed internally, her body rejecting the foreign plastic tubes that lay within her body. It was now time to get her off ECMO regardless of her current condition. After an ultrasound they found that Amber’s heart function had deteriorated further and she still had some fluid on her lungs. We were told that Amber coming off ECMO successfully was slim. It had all come down to this moment; our baby may not survive this. We kissed her, stroked her hands and head whilst whispering words of encouragement before we left her in the hands of the medical team. With all of our energy we held onto each other and prayed, willing her to hold on and get through it. Waiting for the outcome felt like the longest time of our lives. When Amber’s surgeon entered the room with tears in his eyes and a smile he announced that she was off ECMO; her heart kicked in and started beating right away, going strong! We both embraced him and we all cried together with relief. Writing this through tears now we will never forget this moment; one minute pure hopelessness at the thought of losing our baby, the next an outpouring of relief and emotion. She did it, against all odds!  Amber remained in ICU for another week during this time being slowly weaned off the drugs and extubated, each milestone celebrated together with her medical team. We spent Christmas and the New Year as a family with Amber in the ICU, a tough time of year to be in hospital but so thankful that we still had our girl with us.  Throughout this whole time somehow found the strength to keep our families and friends updated. Messages of support and prayers for Amber continually poured in, something we are so thankful for, as we know this helped both Amber and us to keep going.

Amber’s recovery over the 6 months following continued to go from strength to strength much to the amazement of us and many around her including her medical team.  Then suddenly Amber began to show signs of blueness in her hands, lips and more tiredness. This was an unexpected turn in her recovery and after another round of invasive testing on 30th June the results showed that Amber’s heart has deteriorated further with her AV valve now severely leaking. 

Her medical team advised us they could not offer Amber surgery to repair the valve only able to prescribe medication to stabilise her but this would not sustain her long term, eventually her heart would fail. This was such devastating news to us and we have struggled to come to terms with the reality of Amber leaving us so soon. Even through this haze Tim and I vowed to fight on for Amber telling her Cardiologist that we wanted to seek other opinions to find someone who could help her. Her results were sent on our behalf to the Royal Children's Hospital in Melbourne for review however we were told not to expect the RCH to offer Amber valve repair surgery due to the high risk involved given her past history, pulmonary hypertension and complexity of the surgery. Our hope was fading but we were not about to give up; if she was refused there we would try overseas. On 24th July we got the call to say that the RCH in Melbourne will offer Amber lifesaving surgery to repair her valve which is scheduled for the end of August. We are happy and relieved that Amber has been given some hope and another chance at life. We remain positive and are confident that she can overcome this next big hurdle in her life and we will all be right next to her cheering her on and holding on tight. She is strong willed and very determined to do things her way in everyday life so we are not expecting anything less, she is one special little girl who continues to beat the odds and amaze everyone around her.

We remain optimistic for Amber’s future and along the way we have learnt to take life day by day, enjoy every moment with our children and take nothing for granted.  Having a HeartKid is like being on a rollercoaster that you can never get off and true to this we have ridden and are still riding this emotional rollercoaster - the ups and downs, twists and turns. Through all of this Amber has shown us courage, bravery and great strength and will to survive; she has taught us so much.  We cannot put into words how eternally grateful and thankful we are to all of the amazing medical professionals that have enabled Amber to carry on in life with us.  We are thankful to our many family and friends who have been an immense support to us in more ways than one and that is everything we could ask for as it has certainly helped us make it this far emotionally. We ask that you all send positive thoughts, energy, prayers, and love, everything good for Amber to help her in the lead up to surgery, during surgery and for a speedy recovery afterwards.

We are also very passionate about HeartKids who have been there every step of the way as they continue to be a great support to us and other families.  They are the only health charity in Australia dedicated to improve the lives and futures of children affected by CHD by providing support to families, spreading awareness and driving world class research into the unknown causes of CHD.  We hope that in years to come with more research and medical advancements Ambers life expectancy and the many other babies and children living with CHD every day can be extended.

This year we are raising money for HeartKids by holding fundraising events alongside the Mandurah Makos/Peel AFL Masters FC and also through receiving personal and corporate donations.  We have been affiliated with the Mandurah Makos/Peel AFL Masters FC for the last 5 years, a valued support to Amber and our family.

Our next fundraising day will be held on Saturday 30th August at Rushton Park North in Mandurah.  Kicking off at 10am it’s a great family day out with something for everyone including a full day of football matches across three grounds, a major raffle, loom band stall and workshop, a cake stall, kids lucky dip raffle, kids heart & craft competition, second hand book sales, face painter, jumping castle and much more. We are also launching an online auction leading up to the day that will have a range of big ticket items on offer which will be advertised on the Mandurah Makos facebook page https://www.facebook.com/MandurahMakos and on the Mandurah Makos website www.makos.com.au

For the many of you that want to show your support but cannot make it on the day, we have set up an online fundraising page that you can donate to. All donations go direct to HeartKids. Head to: https://give.everydayhero.com/au/field-family and pledge your support J

For any enquiries please contact Kirstin & Tim Field on m: 0407 260 350 or email charity@makos.com.au